WILTON — They were brothers, just a few years apart in age, who shared not only similar criminal backgrounds, but also a terminal illness that would kill them before they were 50: Huntington’s disease, a neurodegenerativegenetic disorder that affects muscle coordination and leads to mental decline and behavioral symptoms.
They were incarcerated at the Maine State Prison in Warren, one for arson and the other for a variety of charges. Both were registered sex offenders.
The younger brother, just 37, saw in his sibling the symptoms of Huntington’s disease (once called Huntington’s chorea) that would, one day soon, consume his own mind and body. Symptoms can vary between individuals and affected members of the same family, but usually progress predictably. The earliest symptoms are often subtle problems with mood or cognition. A general lack of coordination and an unsteady gait often follow.
As the disease advances, uncoordinated, jerky body movements become more apparent, along with a decline in mental abilities and behavioral symptoms. Physical abilities gradually worsen until coordinated movement becomes difficult. Mental abilities generally decline into dementia.
While one brother could still move independently with jerky steps about his cell, the other rarely moved from his bed.
They were receiving hospice services from the trained inmate volunteers, and presented few, if any, behavioral challenges to the corrections officers. In fact, they were ultimately confined to tiny, sterile infirmary rooms.
They had nowhere to go, and the prison social service staff had not been able to find another setting for them where they could receive the necessary supervision and, in the case of the brother whose condition was more advanced, nursing care. Both had time remaining on their sentences.
As a nursing home administrator who had previously admitted inmates to our facility, I visited the brothers at the prison, accompanied by my directors of nursing and of residential care.
After assessment, we decided that we could and would provide appropriate care. The social services staff prepared an application to the state corrections commissioner for an admission of the brothers to our nursing home under the authority of the supervised community confinement program administered by the Maine Department of Corrections.
The program is rarely used, and I suspect that the four inmates I have admitted over the past 12 years are among a very small pool of approved participants.
In each case, we successfully integrated the men into our resident community at the nursing home while providing nursing care, activities, proper nutrition, weekly physician visits and a sense of dignity.
Although all four were on the sex offender registry and the nursing homes were near local schools, we continued with our intergenerational program with visits from third- and fourth-graders, and our traditional Halloween and Christmas programs. We had fully disclosed to school authorities and parent-teacher groups the presence of the men. As long as the inmates did not take part in the children’s visits (under the terms of the registry, they couldn’t anyway), nobody – yes, nobody – objected.
The brothers’ stay generated visits from family members, including their children, who they had not seen for a long time. One of the siblings enjoyed an emotional visit from a daughter he did not know that he had.
The point in all this is twofold.
• There are many elderly, incapacitated and frail inmates (some with dementia) who could finish out their lives in comfort and dignity in appropriate settings – nursing homes, licensed hospice programs, assisted living, group homes, private residences – if the supervised community confinement program were more actively utilized.
• The economic impact for the state corrections system is obvious. Nursing home and assisted living care would be funded under MaineCare with substantial federal funding available. Medicare would be available for those 65 and over.
Reduction in our national mass incarceration rates is part of the national political debate. The sentence commutations of low-level drug offenders recently granted by President Obama are also an important step of real value to the released inmates and of symbolic value to all of us.
With these two brothers and others as examples, there is also a contribution to be made by strategic use in Maine of supervised community confinement.